Australian reforms enabling disclosure of genetic information to genetic relatives by health practitioners.

Source

Faculty of Law, University of Tasmania, Australia. margaret.otlowski@utas.edu.au

Abstract

The familial nature of genetic information means that information about one family member may have relevance for the health of genetic relatives; however, patients are not always willing to share relevant information. This article outlines groundbreaking legislative developments in Australia which create a lawful pathway for health practitioners to make disclosure of genetic information to genetic relatives notwithstanding refusal by the patient to consent to such disclosure. The article traces the background to this reform, and its implementation through amendments to the Privacy Act 1988 (Cth) and the introduction of enabling guidelines. It examines the circumstances in which disclosure is permitted and the protocols established under guidelines and the strengths and limitations of these reforms. Pursuant to these changes, health practitioners are not legally obliged to make disclosure but are legally able to do so without breaching statutory privacy obligations. The aim is to encourage this as best practice in appropriate circumstances but questions remain regarding the interplay between ethics and law if disclosure is indicated but not made with adverse health consequences for the relatives.